Who We Are
The Patient and Public Voice (PPV) Group brings together people of all ages from across the South Wales and South West of England CHD Network who are affected by congenital heart conditions.
We are committed to ensuring that the voices of patients, families, carers and the public are heard, helping to shape and to improve CHD services across our Network.
The PPV Group represents people with lived experience of CHD including patients, parents, carers and family members. We work alongside healthcare professionals to ensure that patient experience and perspectives influence the way services are developed and delivered.
What We Do
The PPV Group works in partnership with patients, families and NHS professionals to:
- Represent the views of people with lived experience of CHD
- Champion the patient and public voice across the Network
- Influence service improvements and future care
- Review patient information and resources
- Support quality improvement projects
- Co-produce patient information and resources
- Help improve patient care through collaboration
Our PPV Group values
- Partnership
- Listening
- Respect
- Inclusion
- Collaboration
- Improving Care
How We Work
The PPV Group meets regularly throughout the year to discuss priorities, share experiences, and contribute to projects that improve CHD services and resources.
- Meetings - information about meeting dates and activities
- Terms of Reference - Read our Terms of Reference which explains the purpose of the group, how it operates, and the responsibilities of our members.
Get Involved +
There are lots of ways to support CHD services
Share Your Feedback
The Network exists to benefit patients. As such, we very much value your feedback on all aspects of the work we do. Whether you are a patient, family member, or member of the public, your experiences and ideas help us improve the care we provide.
We welcome any thoughts, comments, ideas or feedback on:
- Your experience of CHD services
- Communication
- Facilities
- Patient information
- Suggestions for improving care
- If you would like to join our Network newsletter mailing list
- Anything else you think is relevant
Every comment helps us better understand what matters most to patients and the public in relation to CHD services - we look forward to hearing from you!
Email: CHDNetworkSWSW@uhbw.nhs.uk
Join the PPV Group
We are always looking for new members who want to make a difference to CHD care.
- Who Can Join?
- Anyone with lived experience of CHD
- Patients, parents and carers, family members, members of the public with an interest in improving CHD services
- Time Commitment
- For information about meeting frequency, expected involvement and opportunities to contribute between members, please refer to the PPV Group Terms of Reference.
- Benefits of Joining
- Help improve CHD services
- Share your experience to influence change
- Work alongside healthcare professionals
- Meet others with lived experience
- Contribute to meaningful quality improvement projects
- Helpful Information
- Before applying, please read the following documents:
- Terms of Reference - this explains the purpose, structure and responsibilities of our PPV Group.
- Role Description - this outlines what being a PPV members involves and what is expected.
- Before applying, please read the following documents:
PPV Publications +
Explore resources, publications and information produced by the PPV Group
- Ageing Well: Living Longer with CHD (coming soon!)
Patient Stories +
Patient Stories
Patients are at the heart of everything we do as a Network. In this section, you can read stories shared by people living with CHD and their loved ones. Written in their own words, these experiences offer insight, encouragement, and support to others navigating similar journeys.
We hope these stories reassure patient and families that they are not alone on their cardiac journey, while also helping healthcare professionals better understand the lived experience of CHD - we are in this together to support each other!
Share your story – we’d love to hear your CHD story
- If you or someone you care for has experience of CHD, your story could help improve services and support other patients and families.
- With your permission, stories may be:
- Published on our website
- Shared anonymously at Network meetings to support learning and service improvement
- Used to celebrate examples of excellent care and identify opportunities for growth
You can share your experience in any format you choose. If it helps, you can download our patients story template (link).
When submitting your story, please also include:
- A completed Adult GDPR consent form (link), or Child GDPR consent form (link)
- Photographs (optional, if you are happy to share them)
Please email your story to: CHDNetworkSWSW@uhbw.nhs.uk